Hello from a recently diagnosed Person with PMR

[BuffyJack64]

Hi everyone, I am newly diagnosed with PMR. It's a bit of a shock on the one hand, but also a relief in a way to have a name for my symptoms. So really I am adjusting to it. My hope is to find out more, and make informed decisions about treatment, work and my life.

[random901]

Hi BuffyJack64! I'm in SW, too. Gardening and nature great tonics! All the best.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Loads of information in the FAQs… but read in slow time, can be a bit overwhelming at the beginning, but maybe start with this one as an intro -

healthunlocked.com/pmrgcauk...

Always someone around as we have a worldwide membership… although mainly UK. So don’t sit and worry about any issue - just ask😊

Maybe have look and see if there is a support group locally where you could go for a chat - living in rural area can be isolating or join the monthly online group

pmrgca.org.uk/get-support/g...

online -

WedPM Zoom Support group (a Kent-based group, but open to absolutely everyone) – you are very welcome to join us on the fourth Wednesday of the month at 3pm on Zoom. Members of the group are from across the UK. To join you will need to register your interest by emailing [e-mail]

..and do please join the charity if you haven’t already..

[PMRpro Ambassador]

Hi and welcome!

DorsetLady will be along with her welcome post - do read it and the links in it carefully as it really is a potted introduction to PMR and what this forum has to offer. There is a link to the FAQs in a box under the title post in every thread - I'm saying rather than giving you the link as you will lose that - now you know where to find it! Get to know your way around the FAQs and read them in your own time, there is a lot but you are likely to find the answer to most questions there - useful when you are having a panic in the middle of the night! No question will be ignored - DL and I read every post and reply but not immediately, might take a few hours, even we sleep!

Try and ask fairly specific questions - very general ones might get a long response and you STILL haven't got the info you wanted. And you are welcome to have a rant any time - as long as it is decent!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

DL and I read every post and reply but not immediately, might take a few hours, even we sleep!

But sometimes we reply in our sleep…😉

[PMRpro Ambassador in reply to DorsetLady]

Is that what it looks like?

[Charlie1boy in reply to PMRpro]

Never realised you ACTUALLY sleep!!!😳

[DorsetLady PMRGCAuk volunteer in reply to Charlie1boy]

maybe you're right...and we are superhuman after all...😼

[PMRpro Ambassador in reply to DorsetLady]

Of course we are ... 😇

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well didn’t like to say that! …

[sidra1968]

Welcome! A wonderful group of people here who know so much about PMR and are very helpful.

[Louisa1840]

Well I reckon PMRPro and Dorset Lady ARE super human and we can't thank or appreciate them enough!!!

[Mfaepink1973]

Hello and welcome to the club none of us want to be in! You’ve chosen the best forum for PMR. You’ll get plenty of information and good advice here.

[MrsPMR]

Hi and welcome - I’m pretty new to the club as well, but my best advice so far is to spend some time on here, reading, digesting, and learning. It’s an incredible source of knowledge and support that I hope will help you. Take your time and reach out as needed.

[Swizzly]

Hi BuffyJack64

I am diagnosed with PMR since April 2024. I live in Switzerland and I've only found one single person with PMR through the Rheumaliga.

That's why I'm so glad to have found this forum 🍀 alone with this disease would be depressing.

Thanks to everyone sitting in the same boat 😊

[SHNOOKIEDOODLE]

I’m so very glad this forum entered my life after being properly diagnosed with PMR in April2021 with a wonderful rheumy that listened and diagnosed after a misdiagnosis of Rheumatoid Arthritis in January and treatment that failed to do anything but make me feel worse. It was explained to me how PMR and Rheumatoid mimic each other in some ways but their treatment is very different. I’ve been following a very very slow taper and am down to 10mg per week… dropping by about 10% every 2/3 months. Have many times felt like going up but luckily I push through on lower dose and soon my body adjusts. That’s not to say that I may never have to go up again if a flare comes on. So I’ll stop rambling and just give thanks for the invaluable info from experts and newly diagnosed people. Hope you’re feeling better soon

May in NY

[PMRCanada]

Welcome!

Lots of great information, wisdom and resources shared on this sight by people who “get it”. It is a shock for most of us as symptoms can just appear overnight, and diagnosis may not be straightforward, but the relief it and proper treatment brings is most welcome.

You are in the early stages of your journey and we are here for you as questions/concerns arise. Be patient with yourself along the way. Many of us have gone through similar feelings adjusting to life with a chronic illness. Coming to accept your condition helps as does making the necessary adjustments along the way.

[Alebeau]

Hi and welcome to this extermely helpful forum.

My journey began much like yours (October 2018) as I was in so much unexplicable pain that once diagnosed it was a sense of relief to know whet it was but at the same time a sense of oh great - now what?

I went through many many ups and downs over the years and I think it was due to poor advice from doctors (reducing prednisone too quickly) along with a long history of stress in my life at that time. In hindsight I think I was fighting a losing battle.

Best advice I received was to split the dose (1/2 in morning and 1/2 at night) as I was having morning pain every day for a long time. Once I split I was born again - a new man. This was about 2 years after diagnosis and many pain meds including Tylenol 3, Tramadol and Dilaudid - should really just have increased the prednisone instead to get back to a pain free status. Don't fall into that trap.

The next best advice it to tape extremely slowly to achieve success - I get blood work every month and reduce only when the ESR and CRP are within acceptable levels and I feel good.

I am currently at 9.5 MG and have much less stress so I am hoping that this time my reduction will be a success.

Good luck to you - I was 70 years old when diagnosed and am now 75.

[Andos16]

Welcome, I merely click on Like to replies from people much more experienced than I, but I have learnt so much here. Go slow and don't necessarily listen to doctors, even rheumatologists!!

[PMRpro Ambassador in reply to Andos16]

EVERYONE has something of value - even if it was how something didn't help them.